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Pay close attention to hear ovarian cancer's whisper

This article first appeared in the St. Louis Beacon, Sept. 16, 2009 - I was lucky. A deep vein thrombosis (DVT) surfaced while I was vacationing in Delaware and made me finally check out symptoms I'd been ignoring for months -- namely, a 25-pound weight loss and nausea. It was ovarian cancer.

A hematologist tagged the symptoms with a name and pointed me in the direction of recovery and, I hope, a cure.

Let me set the stage for my story. I was a reporter and editor for the St. Louis Post-Dispatch for 27 years before trading my keyboard for a wheelbarrow in 2005. I retired to start my own business as a horticulturist and landscape designer.

My first planting season consisted of long days of hard, physical work, but I felt strong and happy. I began shedding pounds like sweat -- and gave no thought to anything being amiss. In fact, I bragged about my weight loss. First 10 pounds, then 15, 20 and 25. Midway through that weight loss, though, I began feeling nauseated and I'd feel full halfway through a meal. I told my internist, but she was unconcerned.

In July, my husband and I drove to the East Coast to visit family. While in the Conservatory at Longwood Garden, my leg swelled from the ankle to the mid-thigh and throbbed with pain. I went to the ER in a Wilmington hospital where an ultrasound confirmed a DVT in two veins in my left leg. The doctors admitted me.

A hematologist came to talk to me because of my family history: Both my mother and older brother had had DVTs. The doctor urged me to consult a hematologist when I got back to St. Louis. First, I saw my internist. She still failed to see any connection between the DVT and the weight loss and nausea I'd mentioned four months earlier. By now, I was vomiting two or more times a week. I visited a hematologist two weeks later. He immediately suspected cancer.

Within a couple of days, I'd had a transvaginal ultrasound, a CT scan and extensive blood work. The doctor called to announce that I'd been on the agenda at the weekly tumor board. Not a good sign.

The rest of that day -- and the ensuing week, as I prepared for surgery -- was a blur. I met with a GYN oncology surgeon and we scheduled a hysterectomy and oophorectomy. He said the mass could be uterine or ovarian cancer -- or it could be benign cysts.

I knew in my heart it was cancer, but I held out hope for Door No. 3. My family has little experience with cancer, so how could I have it? As for ovarian cancer, I knew nothing more than that Gilda Radner had died of it and that one of the symptoms was abdominal bloating. Despite my training as a journalist, I did nothing -- truly, nothing -- to research what it would mean if my mass turned out to be malignant.

The day of the surgery, I was surrounded by my family and pastors, and that helped keep me relatively calm. Just before going under the anesthesia, it occurred to me to ask what the blood tests had shown. (I was so ignorant of the details of my potential disease that I didn't even know that one of the diagnostic tools is a blood test called the CA-125.) My surgeon answered vaguely, "It was a little elevated." I didn't press him further and wasn't alarmed. (I later found out it was more than 23,000, when the standard is under 30. Thankfully, I didn't know that before surgery.)

When I came to that night, I learned he'd found masses on the ovaries. A few days later, the pathology came back. It was ovarian cancer, Stage III-B. It had spread outside the ovaries to the omentum, a layer of fatty tissue in the peritoneum, but not to the lymph nodes.

In the days after my diagnosis, I zeroed in on the scary facts relating to ovarian cancer.

  • The Pap smear doesn't detect it; in fact, there is no early detection test.
  • Each year, more than 22,000 women are diagnosed with it; about 15,000 die.
  • For three-fourths of the women who are diagnosed, their disease is in an advanced stage -- Stages III or IV -- when it's harder to treat successfully. Those women have a 70 percent to 90 percent chance of recurrence.
  • The overall survival rate after five years is 46 percent.

I told myself I wasn't a number. Somebody had to be on the lean side of the statistics.
My gynecologic oncologist offered me what was then a new protocol of chemotherapy. It combined the standard intravenous chemotherapy with an intraperitoneal infusion -- that is, directly into the abdomen. He told me it would be a very difficult course of treatment but that it offered me the chance of more time. I took it.

A friend dubbed me a warrior, and with that in mind I visualized myself striking one of yoga's warrior poses as Pac-men gobbled up big bad cancer cells. It was one of the pleasant delusions induced by the so-called cocktail of drugs the nurses fed me through my IV during my infusion.

The doctor was right about the rigors of this chemotherapy. I wasn't just nauseated; I hurt. The drugs produced many side effects. Some were fleeting, others took up permanent residence; most were annoying, but none was intolerable.

With no recurrence to date, my oncologist marked the two-year anniversary of my remission by taking out my port. It was a triumphant moment. I knew -- make that, I know -- the cancer can resurface any day, but I'm grateful for the days I do have.

When I look back -- and who among us doesn't? -- I wonder how I could have missed the signs that I was sick. In retrospect they seem unmistakable. I had to be deceiving myself to think I was well in the spring of 2006. After all, I'd lost a lot of weight. I was nauseated and unable to eat a full meal. The urge to urinate was stronger than usual after a few hours of gardening.

The only symptom I didn't have of the four that are most commonly found in women with ovarian cancer was abdominal or pelvic pain.

What if I had been less casual in mentioning to my doctor the first time that I'd lost so much weight and felt nauseated? What if she'd listened and paid attention? Had my cancer spread by then? If it'd been found before it spread, would I have more time?

No one knows the answer to those questions. I can't do anything to change the course of my history. But I can help other women -- and, for that matter, doctors -- learn and recognize the symptoms of ovarian cancer more readily than my doctor and I did.

With the encouragement of my oncology nurse, I got involved with St. Louis Ovarian Cancer Awareness just a few months after finishing treatment. SLOCA is a nonprofit, all-volunteer organization of resilient and determined survivors, spouses, doctors and nurses who are passionate about spreading the word about ovarian cancer.

I was drawn to an intriguing program headed by one SLOCA board member named Lyn in which ovarian cancer survivors speak to third-year students at St. Louis University and Washington University medical schools, and I signed on to tell my story. The idea is that by telling the stories of our symptoms and ultimate diagnosis, the students will remember us when they're face-to-face with a patient with similar symptoms.

Soon, Lyn asked me to take over as the program's facilitator. I demurred. I'm not a public speaker, I said, but I offered to help with behind-the-scenes organization.

Just a few weeks later, I was reading the Post-Dispatch when I saw Lyn's lively brown eyes seeking mine from the obituaries. I gasped. I'd had no idea she was dying.

I'm now the facilitator, and I pray Lyn has forgiven me for my hesitancy.

We've expanded our program, Survivors Teaching Students: Saving Women's Lives, to three residency programs at St. John's Mercy Medical Center. Now we're setting our sights on expanding to nursing and nurse-practitioner schools.

I know it's not enough. What's urgently needed is an early-detection test available to all women -- like the Pap smear or a mammogram for cervical and breast cancer, respectively. We need treatments that are targeted to the many different types of ovarian cancer, and therapy that doesn't compromise the patient's quality of life.

But for now, education is king. We talk to women's groups and staff health fairs. We distribute bookmarks and teal ribbon pins. We buy placards on MetroLink, and promote Ovarian Cancer Awareness Day at Busch Stadium (Cards vs. Cubs, Sept. 20). We raise money for research with Katy Trail rides, 5K runs, auctions, fashion shows and the sale of jewelry and other trinkets. We send e-mail blasts, and buy radio public service announcements, and write articles, and wear teal bracelets. We talk to our mothers, our neighbors, our friends and our daughters.

Ovarian cancer whispers, we tell them, so listen -- and speak up.

Online Community Resources

Take a confidential assessment of your chance of developing ovarian cancer, at Women's Cancer Network's web site, www.wcn.org . Click on "Am I At Risk?"

Find a gynecological oncologist in your area. Go to www.wcn.org, click on Find A Gynecologic Oncologist and enter your ZIP code.

St. Louis Ovarian Cancer Awareness offers information, support and fellowship. Go to www.sloca.org.

Join the Gynecological Cancer Networking Group, a monthly support group at the Wellness Community of St. Louis: www.wellnesscommunitystl.org/

Find information about clinical trials, research funding, education and advocacy efforts on a national level at the Ovarian Cancer National Alliance website, www.ovariancancer.org/ .

Learn more about genetic testing at www.myriadtests.com/

Jan Paul, a long-time journalist, is the owner of Groundbreaking Design LLC.

September is Ovarian Cancer Awareness month. Some of the things that are going on include:

St. Louis Ovarian Cancer Awareness kicked off an inaugural bike ride on the Katy Trail from Sept. 10-12, dubbed TROCA, or Trail Ride for Ovarian Cancer Awareness. Three cyclists rode the 225 miles of the trail and a fourth rode 61 miles, raising more than $8,000.

SLOCA will staff a booth at a pep rally on Friday, Sept. 18, at Kiener Plaza before the opening game of the Cards-Cubs series. On Sunday, Sept. 20, SLOCA will be featured in pre-game ceremonies for Ovarian/Gynecological Cancer Awareness Day at Busch Stadium.

Survivors will model fashions from Talbot's at SLOCA's annual fashion show and luncheon on Friday, Sept. 25, at Ces & Judy's, 10405 Clayton Road in Frontenac. The event is sold out.

Area yoga instructors will lead a morning of yoga on Saturday, Sept. 26, called Rise and Shine for a Cure at the St. Louis Artists' Guild Pavilion in Oak Knoll Park, Clayton Road and Big Bend Boulevard. For more information, call 314-660-1066.

FamiliesROC is a 5K run/walk on Sunday, Sept. 27, at Forest Park to raise money for the Washington University Research Group for Ovarian Cancer. Pre-registration starts at 7 a.m. at the Upper Muny lot with the 5K setting out at 9 a.m. A one-mile family fun run will follow immediately after the 5K. Go to www.familiesroc.com to register.